I am the Mom next to, behind or in front of you in the church pew. I can hear the aggravation in your breathing. I can feel your stares. I can see your side way glances and your eye rolls. I have listened to your whispers about my child not participating properly in the mass. I can see the look of horror in your eyes when my child does not receive communion or dances/runs/skips back to the pew on the rare occasion that my child can tolerate communion. Then I see the gasps when my child returns chomping and/or gagging because it wasn't exactly what my child could tolerate that day. Believe me, I know that my child's books/crayons/movements/talking are not appropriate for church (especially for her age)! I am trying to teach my child to be a part of this giving and loving community. Yes, my child leaves to go to the bathroom and 10 minutes later to get a drink of water. Why does this bother you? No, my child can't sit still. Yes, my child talks. Yes, my child is disruptive. Yes, my child crawls under the pews. Yes, my child bounces her legs, shaking the whole pew. Yes, my child chomps on gum. I go through mass witnessing your actions on top of my child's actions and I get irritated, frustrated, emotional. I reprimand the best I can without making a bigger scene and I get more looks and frustrated whispers. I suck back tears through most of the mass. I leave in a much worse place than I was when I walked into this Church of God. The one place where we should be accepted! You are suppose to be my Christian Brothers & Sisters. My child does not do these things to disrespect you or God. My child does these things because, well, because it CANNOT be controlled. My child is special needs. My child has more than one diagnosis: PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) an autism diagnosis, GAD (General Anxiety Disorder), ADHD (Attention Deficit Hyperactivity Disorder), SPD (Sensory Processing Disorder), and Impulse Control Disorder. There are more, but we quit searching for another diagnosis to focus more on helping our child! My child looks "normal". To most, my child appears spoiled, disrespectful and in need of discipline.
The reality is....
- my child's maturity is lacking by at least 2 years, which makes socialization difficult and usually not appropriate.
- my child's sensory system is so unregulated that sitting still is impossible, chewing on gum a must, climbing around needed, leaving for the bathroom a much needed "break".
- my child doesn't understand that what she does effects everyone else.
- my child has oral sensory sensitivities which make receiving Communion a huge challenge, not to mention many foods!
- my child is in a constant "fight" with the body and the brain!
- my child NEEDS your patience and understanding!
I love this! I am the sister of a special needs man, and 45 years ago when we were growing up he was just known as "the retard" and I was "the retard's sister. There was no tolerance or understanding back then. I hope many people read and get what you are saying so in the future siblings and parents of special needs people don't have to face some of the issues my family dealt with.
ReplyDeleteThank you so much! I HATE the "R" word! It is used so casually now! People just don't get it! I am sorry for what you had to endure and I hope that now things are different for you! <3
Deletewhy can't I comment on this except as anonymous?
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